Dementia Alliance Zoom Conference Coming Up

I'm working hard on developing a couple of presentations for the Dementia Alliance Zoom Conference on Managing Dementia-Related Behaviors on the 10th and 11th of this month. Be sure to register even if you can't attend live. All registrants will receive instructions for accessing the recorded sessions and handouts with some good references. The advantage of attending live is that we will have a panel session where you can ask us questions, but if you can't be there you can still get the benefit of what others ask and listen to the recorded presentations.

See my 1-22-21 blog for more information about this free conference. With Pat Snyder and Dr. Trey Bateman and myself as speakers, it should be a conference worth attending...especially when you can do it at your leisure by registering and obtaining the recordings and handouts. I'd recommend both...attend as much of the two days live as you can and catch up with anything that  you missed later when you view the recordings. Oh, and did I mention that it is FREE?

In the meantime, I probably will not be blogging until the 19th. 

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

What I've Learned

This was posted on Facebook by a man in his mid-70’s. I think caregivers might be able to take some of his ideas to heart as well! I've added some comments to each one.

• After loving my parents, my siblings, my spouse, my children and my friends, I have now started loving myself. (So easy to forget when you are so involved with providing care, but it is a MUST DO for healthy, safe caregiving!)
• I have realized that I am not “Atlas”. The world does not rest on my shoulders. (And I don't have to be perfect either!)
• I stopped telling the elderly (anyone!) that they've already narrated that story many times. The story makes them walk down memory lane & relive their past. (Ah, yes, reminiscing is a great mind exercise!)
• I have learned not to correct people even when I know they are wrong. The onus of making everyone perfect is not on me. Peace is more precious than perfection. (This is one that LBD care partners must practice often with their loved ones with a different reality. We say "Do you want to be right or do you want to be peaceful?)
• I give compliments freely & generously. Compliments are a mood enhancer not only for the recipient, but also for me. And a small tip for the recipient of a compliment, never, NEVER turn it down, just say "Thank You.” (This is another one that care partners can practice often for wonderful results.)
• I have learned not to bother about a crease or a spot on my shirt. Personality speaks louder than appearances. (Perfection again, and how it isn't all that helpful!)
• I walk away from people who don't value me. They might not know my worth, but I do. (This can work with a contankorous loved one too. Walk away and return and usually the air will have cleared!)
• I remain cool when someone plays dirty to outrun me in the rat race. I am not a rat & neither am I in any race. (When your loved one accuses you of something you didn't do, speak to their emotions  in their reality and apologize. But then, let it go--don't own the hurt of their accusation.)
• I am learning not to be embarrassed by my emotions. It’s my emotions that make me human. (Caregiving is stressful and emotions often come to the surface. Let them come--but choose to express the negative ones away from your loved one unless you want them tossed back at you three-fold!)
• I have learned that it's better to drop the ego than to break a relationship. My ego will keep me aloof, whereas with relationships, I will never be alone. (Caregivers learn to do this when we drop our need to be right and accept our loved one's reality as the only one where we can communicate.
• I have learned to live each day as if it's the last. After all, it might be the last. (We know this better than most!)
• I am doing what makes me happy. I am responsible for my happiness, and I owe it to myself. Happiness is a choice. You can be happy at any time, just choose to be! (Caregiving may not have been what you would have chosen to make you happy, but you CAN choose to be happy and to find little things to be grateful for each day.)

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

FREE Zoom Conference on Behavior Management

The Dementia Alliance of North Carolina is presenting a two day Zoom conference on behavior management on Feb. 10 and 11 from 11 to 2:30 each day. Click here for more information.

The conference is in honor of Dr. David Kaufer, a very Lewy-savy neurologist who passed away last year. Dr. Kaufer was a mentor for Pat Snyder, author of Treasures in the Night, a very good book about making the early stages of LBD last as long as possible. Pat will be one of the speakers and I will be as well. Dr. Trey Bateman, who worked with Dr. Kaufer, will be the third speaker. It should be a conference well worth taking the time to view.

The conference was going to be held in North Carolina with an audience limited to those who could attend physically. However, Covid changed this as it did so many other events. But that’s not so bad in this case. Now, with a virtual Zoom conference, we are able to make the information available to anyone who wants to watch!

The three of us will present our different takes on a single subject: management of dementia-related behavior, with a focus on awareness (learning all you can about the disease and how it causes the behaviors), attitude (how you think and feel about the behaviors) and actions (what works and what doesn’t and why). Although all three of us have strong LBD-related backgrounds, the Dementia Alliance addresses all dementias and so does this conference.

Click here to register for this FREE conference or to just learn more about it.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Recovering from Covid, Pt. 2

Last week’s blog was about using activity and posture to assist you or your loved one to recover from a bout of Covid.  It and this week’s blog are based on a list about “fighting Covid at home” that was circulated online by a woman who was sent home from the hospital to recover. It is important to note here that these blogs are NOT about preventing Covid, but about assisting the recovery after it been identified and treated. This week’s blog is about diet and nutrition. As I did last week, I have crossed out those items unsupported by science and added my own comments in italics.

• Eat at least 1 - 2 eggs a day, plus bananas, avocado and asparagus. These are good for potassium.  (Good foods to eat anytime. While potassium does not prevent infection, it does promote recovery.)
• Do not drink anything cold - have it at room temperature or warm it up. (There is a notion that cold water may cause lungs to become scarred. There is no evidence to support this claim.)
• Do drink lots of fluids. Water with lemon, and little honey, peppermint tea, apple cider are good suggestions for getting in fluids. (Staying hydrated is important for maintaining good health and for supporting your immune system.)
• No milk products. (Milk products are good sources of nutrition. Although once thought to create more phlegm in the lungs, they do not.  They do make existing phlegm thicker and more irritating, in which case they are best avoided just until the phlegm goes away.)
• Drink a smoothie of blueberries, strawberries, bananas, honey, tea and a spoon or two of peanut butter. (Antioxidants, a natural sweet and a little protein--all healthy foods that will help to boost immunity. Use green tea for an even greater immune boost.)

The doctor also recommended the following supplements and drugs. Brand names are shown but you can buy generics for most of these items and they will usually be just as good--and much less expensive! Be sure to check with your doctor before using any of them. Normally you might not do this for yourself, but if you are already recovering from Covid, you and your doctor need to be on the same page. Don’t take anything that hasn’t been approved. And of course, Covid or not, check with your loved one’s doctor giving them to your loved one.

• Sports drinks with electrolytes (Pedialyte, Gatorade Zero, Powerade Zero) to prevent you from becoming dehydrated. (Electrolytes help your immune system recover from Covid but drinking them will not prevent it.)
• Vitamin’s D3, C, B, Zinc, Probiotic One-Day are good ideas. (As above, these all support your immune system as you recover from Covid but they will not prevent it.)
• Acetaminophen (Tylenol) for fever. (An old favorite and fairly safe, used sparingly.)
• Guaifenesin (Mucinex) for drainage, plus helps the cough. (Avoid giving your loved one those with additional ingredients such as Mucinex DM. They can cause problems with LBD.)
• Famotidine (Pepcid) helps for cramps in your legs. (This is an antiacid used to treat heartburn and is unsupported by research for use with leg cramps. Try drinking more water!)
• One baby aspirin everyday can help prevent getting a blood clot, which can occur from low activity. (While there is evidence that Covid patients clot more easily, evidence for use in milder cases is lacking. Ask your doctor if you need this.)

The bottom line is, stay active, stay hydrated and eat healthy with a focus on potassium-rich foods (not supplements, which aren't very helpful), antioxidant-rich foods and supplements that support your immune system. I hope this helps you, your loved one or someone you know.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Recovering from Covid, Pt 1

We all know our loved ones are often better off at home than in a hospital where the staff may not know how to treat their LBD-related symptoms safely. This does not mean you should try to treat your loved one’s Covid at home without a doctor’s guidance or that you should avoid using hospitalization when needed. However, with hospitals as crowded as they are, doctors are often encouraging home care and you may be faced with this task. If you are dealing with Covid yourself, you may also be dealing with it at home. The same goes for you as for your loved one. Don't try to treat yourself at home without a doctor's guidance.  Of course, if you have Covid  someone else needs to care for your loved one until you aren't contagious. (Yes, I know. This is often a difficult thing to make happen but it is still critical.)

The following list about "fighting Covid at home" has been circulating online and it's likely you've already seen it. A woman who had Covid and was being discharged from the hospital to finish recovering asked what she could do to fight the virus at home. Her doctor gave her this list. I liked the concept but decided I should check it out a bit before I passed it on. I found that there are several issues with it. I've left but crossed out the items that aren't supported by science and added comments in italics.

Your loved one may not be able to do some of even the more helpful  things or may need your help. But first, let me reiterate, this is for someone who has been treated for Covid and sent home to recover—not someone who is trying to avoid Covid.

• Sleep on your stomach to give your lungs more room to work and prevent fluid from setting in.(No evidence that this benefits (or harms) a person who does not already require ventilation. And if you are that sick, you need to be in a hospital!)
• Set your alarm for every two hours, then get out of bed and walk for 15-30 min, no matter how tired or weak that you are. (Getting adequate sleep is also important. Most seniors need to get up several times a night anyway. Instead of setting an alarm, use these times to do some extra walking. However, if that little bit of exercise tires you out or makes you feel winded, it can be a sign that pneumonia may be developing. Call the doctor!)
• Breathe in thru your nose, and out thru your mouth. This will help build up your lungs, plus help get rid of excess fluid in your lungs. (Only important if you were sent home from the hospital recovering from Covid-related pneumonia.)
• Move your arms around frequently, it helps to open your lungs. (However, it is important not to overdo. Exercise only as much as you can do without feeling out of breath.)
• While watching TV - get up and walk during every commercial. (As above, exercise is good as long as it doesn’t tire you out or cause shortness of breath.)
• When sitting in a recliner, sit up straight. (This helps your lungs work better.)

Next week's blog will finish this with some suggestions for diet and nutrition. Bottom line for this segment is to keep active without overdoing and use your posture to help your lungs function as well as they can.

Two other things: 1. In view of how much of the original online post was not scientifically supported or incomplete , check out what you read, especially online, before you accept it as fact! 2. Remember that this is about  how to help your body (or your loved one's body) recover once Covid has been identified and treated, not how to avoid it!

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Forgiveness

This week I've invited Pat Snyder talk to us about forgiveness. This is a great subject to discuss right now when we are both so distant from so many of our loved one and so crowded up together with those with whom we live day in and day out. With this added stress, anger, blame and other negative emotions get closer to the surface. But expressing them hurts you a lot more than it does the person you are mad at. Let them go! Yes, I know, easy to say! But Pat makes it quite doable.

Here is her 11.5 minute video: Forgiveness 

Take what she tells you and use it! You will feel a lot better, I'm sure. I know I do when I let go and forgive.

We are taking a holiday break and so my next blog won't be until January 8, 2021. Merry Christmas and a Welcome New Year! 

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

How Serious is Covid-19?

This isn’t an LBD related issue, but in a way it is. We are all likely either at risk or closely connected to someone who is at risk for Covid-19. Just how serious is it? I thought you might like to see what I found out about some myths I’ve been hearing about Covid-19.

Myth: Repeated testing inflates the numbers. Truth: Each person has an ID and is counted only once no matter how many tests they take. (This is one I did wonder about, what with so many people getting tested and retested regularly.)

Myth: Only seniors are at risk. Truth: The 50,000 Covid deaths of people under 65 is 18.5% of the total number of 270,000 deaths!

• Covid-19 has surpassed opioid overdoses as leading cause of death for ages 25-44. (This one surprised me!)
• Anyone with an underlying health condition such as obesity, heart disease, cancer or diabetes is also at risk. (This group makes up 40% of our population. I'm in it. Are you?)
• Asymptomatic younger people can pass the virus on to those who are at risk. (Like my daughter who lives with 2 ninety year-olds. Or many of you who live with, or want to visit, a loved one with LBD.)

Myth: Hospitals inflate Covid death numbers to get more money. Truth: Hospitals may receive money for Covid deaths, but doctors don’t and they are the ones that do the certifying. (Yes, hospitals get money but the cost per patient is more than they receive and so the hospitals really want this to go away! In addition, they only have limited staff. Here in Arizona, that is becoming a major issue.)

Myth: The 270,000 Covid deaths is very small compared to the total US population. Truth: True, something like .03%. But compared to other death tolls, it is one of the worst.

• Wars:
• Vietnam War: 58,000
• Korean War: 37,000
• World War II: 405,000
• World War I: 116,000
• Civil War: 600,000 to 850,000
• Pandemics:
• 2009 H1N1: 12,469
• 1968 flu: 100,000
• 1957-58 flu: 116,000
• 1918 flu: 675,000
• Covid-19 to date: 270,000 with 450,000 predicted

Myth: The virus is going to do what it is going to do. Protect the vulnerable and let everyone else get on with their lives. Truth: The “vulnerable” are all around us, but there is a lot we can do to stop the spread.

• Since about 40% of Americans are in the at-risk group, even those who are not at risk are probably in close contact with someone who is.
• We know that it is a respiratory disease that mainly infects via breathing, thus masks and social distancing provide protection.

And so, bottom line, stay home as much as possible, wear your mask and do social distancing when you go out. Use the computer and phone to keep in contact with your loved ones! And lets all pray that a vaccine comes quickly and works well!

References: Nicole Carroll, Why Do People Deny the Seriousness of Covid-19? USA TODAY, with number updates from the John Hopkins University. Friday, December 4, 2020,

 Gillian Brockell, 250,000 Lives Lost: How the Pandemic Compares to Other Deadly Events in U.S. History. The Washington Post, November 19, 2020.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia, Ed. 2
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.